Ua ʻike mākou a pau e hiki ke mālama ʻia kekahi mau maʻi ma ka hale kūʻai lāʻau lapaʻau. Akā, aia kekahi mau maʻi kūikawā a kakaikahi i mālama ʻia ma ka haukapila, ma lalo o ka nānā pono ʻana a nā kauka. ʻO Hemin kekahi o ia mau lāʻau lapaʻau, hoʻohana ʻia i nā hihia kūikawā loa, a hāʻawi ʻia ma ke kino. No laila, i kēia lā, e kamaʻilio pōkole kākou e pili ana i kēia lāʻau pale Hemin, kāna hana, iā wai i hāʻawi ʻia ai, a me nā mea e pono ai ʻoe e ʻike e pili ana i ia mea.
He aha ke ʻano lāʻau lapaʻau ʻo Hemin?
Hoʻohana ʻia kēia lāʻau lapaʻau i kapa ʻia ʻo Hemin e mālama i kahi maʻi laha ʻole i kapa ʻia ʻo 'Acute Intermittent Porphyria.' He inoa paʻakikī iki kēia, no laila e wehewehe maʻalahi kākou.
He kūlana hoʻoilina kēia. I ka pololei, ua hana ʻia e kahi kīnā i ke kaʻina hana o ka hana ʻana i kahi ʻāpana o ko kākou koko i kapa ʻia ʻo 'Heme'. He mea nui kēia 'Heme' no ka hemoglobin i loko o ko kākou mau hunaola koko ʻulaʻula. Ke hoʻopilikia ʻia kēia kaʻina hana, hōʻiliʻili nā kemika ʻino i loko o ke kino, e hana ana i nā hōʻailona like ʻole e like me ka ʻeha nui o ka ʻōpū a me nā pilikia o ka ʻōnaehana nerve.
No laila, ʻo kēia lāʻau lapaʻau i kapa ʻia ʻo Hemin (ʻo ka inoa inoa paha o ka lāʻau lapaʻau ʻo 'Panhematin') ke kāohi nei i ka hemahema o ka hana ʻana o 'Heme' a hōʻoluʻolu i nā hōʻailona. I nā huaʻōlelo ʻē aʻe, he lāʻau lapaʻau kēia e hoʻopilikia i ke kaʻina hana kumu e hoʻoulu ai i ka maʻi.
Nā mea e haʻi aku i kāu kauka ma mua o ka hoʻohana ʻana i kēia lāʻau lapaʻau
No ka mea he lāʻau lapaʻau kūikawā loa kēia, he mea nui loa ia e hoʻomaopopo i kāu kauka e pili ana i kou mōʻaukala olakino piha ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau. E hōʻoia e haʻi iā lākou e pili ana i kēia mau mea:
- Nā pilikia o ke kāpili ʻana o ke koko: Inā loaʻa iā ʻoe kekahi mau pilikia o ke kāpili ʻana o ke koko (no ka laʻana, ke kahe ʻana o ke koko e pau koke ʻole ana), e haʻi mai iā mākou e pili ana i ia mea.
- Nā maʻi ʻaleka: Inā loaʻa iā ʻoe kekahi mau maʻi ʻaleka, ʻaʻole wale i kēia lāʻau lapaʻau i kapa ʻia ʻo Hemin, akā i ka latex, nā lāʻau lapaʻau ʻē aʻe, nā meaʻai, a me kekahi mau kala, e ʻoluʻolu e haʻi mai iā mākou e pili ana.
- Hāpai: Inā hāpai ʻoe a i ʻole e hoʻāʻo nei e hāpai, he mea nui e hoʻomaopopo i kāu kauka.
- Inā he makuahine hānai ʻoe: Inā he makuahine hānai ʻoe, pono ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau.
Pehea e hāʻawi ʻia ai ka lāʻau pale Hemin?
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe i ka home. He lāʻau lapaʻau ia i hāʻawi ʻia ma ke ʻano he wai saline i loko o kahi aʻa (infusion) e kekahi loea lapaʻau i aʻo ʻia ma kahi haukapila a i ʻole ke keʻena lapaʻau. E nānā mau ana nā limahana lapaʻau i kou kūlana i kou wā e loaʻa ana kēia lāʻau lapaʻau.
Ke hāʻawi nei ʻoe i kēia lāʻau lapaʻau i nā keiki?
Hiki ke kuhikuhi ʻia kēia lāʻau lapaʻau i nā keiki ʻōpio ma luna o 16 mau makahiki i kekahi mau hihia kūikawā. Akā hana ʻia me ke akahele nui a no nā kumu kūikawā. No laila, inā ʻoe e hāʻawi ana i kēia lāʻau lapaʻau i kāu keiki, he mea nui e kamaʻilio maikaʻi me kāu pediatrician a hoʻomaopopo pono i nā mea āpau.
He aha ka mea e hana ai inā lawe ʻoe i ka nui o ka lāʻau lapaʻau?
Ma muli o ka hāʻawi ʻia ʻana o kēia lāʻau lapaʻau ma lalo o ka nānā ʻana a ke kauka, ua haʻahaʻa loa ka hiki ke loaʻa kahi 'overdose'. Eia nō naʻe, inā manaʻo ʻoe ua overdose ʻoe, e kelepona koke aku i ke Kikowaena ʻIke Poisons Lahui ma ka Halemai Lahui ʻo Colombo a i ʻole ka Emergency Treatment Unit (ETU) o ka haukapila.
Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me kekahi no kekahi kumu.
Hiki paha ke loaʻa nā pilikia me nā lāʻau lapaʻau ʻē aʻe? (Nā Hana like)
ʻAe, hiki i kēia ke hana i nā pilikia me kekahi mau lāʻau lapaʻau. He mea nui loa kēia inā ʻoe e lawe ana i nā lāʻau lapaʻau e pale ai i ke kāpili ʻana o ke koko, e like me ka warfarin.
ʻAʻole piha kēia papa inoa. No laila, e hōʻoia e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā lāʻau lapaʻau i kauoha ʻia a me nā lāʻau lapaʻau kūʻai ʻole ʻia, nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui), a me ka puhipaka ʻana, inu waiʻona, a hoʻohana paha i nā lāʻau lapaʻau ʻē aʻe. A laila wale nō hiki iā ʻoe ke mālama palekana ʻia.
Nā hopena ʻaoʻao e hiki mai ana i ka wā o ka mālama ʻana
E like me nā lāʻau lapaʻau āpau, hiki i ka lāʻau pale Hemin ke hana i kekahi mau hopena ʻaoʻao. Pono kekahi o kēia mau mea i ka nānā koke ʻia, aʻo kekahi ʻaʻole koʻikoʻi. E nānā kākou i kēia mau mea ma kahi papa.
| Nā hopena ʻaoʻao o ka lāʻau pale Hemin | |
|---|---|
| Nā mea e haʻi koke aku ai i kāu kauka a i ʻole nā limahana lapaʻau | |
| Nā hopena maʻi ʻaleka | Ka ʻeha o ka ʻili, ka maneʻo a i ʻole ka ʻulaʻula, ka pehu ʻana o ka maka, nā lehelehe a i ʻole ke alelo. |
| Ka loli ʻana o ka mimi | Ka emi ʻana a i ʻole nā loli ʻē aʻe i ka nui o ka mimi i hoʻopuka ʻia. |
| Ke kahe koko ʻano ʻē | ʻEha maʻalahi a kahe koko paha e mau ana. |
| Luhi maʻamau ʻole | Manaʻo luhi loa a nāwaliwali paha. |
| Nā mea i maʻa mau ʻole i ke koʻikoʻi, akā pono e hōʻike ʻia inā hoʻomau lākou | |
| kuni iki | Ke manaʻo nei i kahi mehana iki i ke kino. |
| ʻEha ma kahi i hoʻokomo ʻia | ʻEha a mumū paha a puni ka wahi i inikini ʻia. |
ʻAʻole paha e komo kēia papa inoa i nā hopena ʻaoʻao āpau, no laila inā loaʻa iā ʻoe kekahi mea ʻē, mai makaʻu e kamaʻilio me kāu kauka e pili ana i ia mea.
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Hemin i hāʻawi ʻia ma ka haukapila e mālama i kahi maʻi hoʻoilina laha ʻole i kapa ʻia ʻo 'Acute Intermittent Porphyria'.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, he mea nui e haʻi i kāu kauka e pili ana i kou mau kūlana olakino a pau, nā maʻi allergies, a me nā lāʻau lapaʻau a pau āu e lawe nei.
- Hāʻawi ʻia kēia lāʻau lapaʻau ma o kahi aʻa (IV infusion) e kekahi loea lapaʻau i aʻo ʻia. ʻAʻole kēia he lāʻau lapaʻau e lawe ʻia i ka home.
- E makaʻala i nā hopena ʻino e like me nā hopena alerika a me ke kahe koko ʻano ʻē. Inā ʻike ʻoe i kekahi mea e like me kēia, e hoʻomaopopo koke i ke limahana lapaʻau.
- Inā he mau nīnau kāu e pili ana i kēia lāʻau lapaʻau, ʻaʻohe mea liʻiliʻi, e ʻoluʻolu e nīnau i kāu kauka.
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